My journey
Written by lililo, published 5 months ago.
Diagnosed with Behcet’s Syndrome in November 2011 after many different wrong diagnoses over several years. There was a suspicion of Behcet’s disease in June 2010 followed by a diagnosis of invasive cervical carcinoma.
The suspicion got confirmed after a treatment of combined chemotherapy confirmed for cancer including cyclophosphamide which made all my Behcet’s symptoms disappear (ulcers, articular pains, skin problems) which came back 6 months after the end of the treatment and then confirmed by a biopsy of the skin and numerous analyses.
I am in my fifties. I am at the beginning of my treatment with highs and lows and am followed by several specialists (immunologist, dermatologist, rheumatologist, internist, oncologist and ophthalmologist) who communicate with each other. 2010 and 2011 were really difficult, but I am getting better and have the will to move forward.
My children and grandchildren, and my husband make me go forward. I hope that 2012 will be marked by wellness and stability of the symptoms with the treatment and this is all I wish for those who suffer from this disease.
Written by lililo, published 5 months ago.
5 comments for «My journey»
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Hello and welcome!! You can read my story on the forum, I have left mine and others have too... I was treated for a long time by cyclophosphamides, ENDOXAN, in courses and in tablets, it works very well on BEHCET's, that is right!! Good luck and well done on your fighting spirit!! Talk to you soon. Kindly
It's been ten years since I was 'diagnosed' with Behcet's and, believe me, I have been prescribed nothing but medrol and colchicine, nothing else for ten years, even during my times of great suffering and flares of Behcet's. I dream of taking other meds, cyclophosphamides for example. This drives me to believe despite myself, that I live dug deep into mediocrity, up to my neck. I would like to know, ladies and gentlemen, if it is possible to be 'teleprescribed' cyclophosphamides from France. This is a call to French doctors.
DEAR AMINE, I know you think your are poorly taken care of in your country but that is not true, here too, we take colchicine and medrol, which is cortisone highly active in our illness, how could you want cyclophosphamides? They're an anti-mitotic, in tablets or in IV courses, which are only prescribed in cancers or severe Behcet's, and I can assure it is not easy!! The side effects are very bothersome and can be extremely serious; I have had very serious infectious issues with many hospital stays, and practically a full year of antibiotics, and red and white blood cells on constant monitoring.
In short, it is a medication that doctors only prescribe when BEHCET's becomes a danger for the patient; so as long as medrol and colchicine prevent any worsening, (such as neuro behcet's with real paralyses or serious vascular problems), doctors prefer these meds which work a little or a lot depending on patients, and now, I only take these meds and others for the consequences of behcet's, like anti-coagulants, heart meds, blood pressure meds, etc, etc... but the basic treatment is colchicine 1 mg and cortisone. Rest assured and enjoy life as much as possible, which is not easy, I understand!! Be strong
Thanks, dominique.
Hello everyone! here I am back after spending 10 days on holiday. I see that the community has new patients which I welcome.Happy new year to all and especially very good health